Sofia the Warrior

Sofia the Warrior

Name: Sofia M.
Type of Cancer: Myxopapillary Ependymoma
Diagnosed: Age 10, 2017
By: Sabrina (Sofia's Mom)
— Categories: Pediatric   Spine  

In December of 2016, our daughter, Sofia, slipped on the wet tile floor. After a few hours of consistent crying, we decided to take her to the ER. Doctors ordered an x-ray and determined she had a bruised coccyx (located in her lower tailbone). They recommended pain medication and rest, saying it could take up to six weeks to recover. After many sleepless nights and lots of Advil, six weeks passed and Sofia felt better. We thought she had healed. At the beginning of June, she started to complain again of pain. Her pediatrician and I assumed she re-injured her coccyx from dancing in her hip hop class. She began taking pain medication again but she only got worse. By the middle of July, we scheduled an appointment to see an orthopedic doctor. He examined her and again assumed she probably had a herniated disk. He advised us to have a six week course of physical therapy. My husband suggested doing an MRI first to rule out anything else. The doctor went along with the idea.

The Day My Heart Broke

A few days later, she went in for what they said would be a 30 minute MRI, until the radiologist decided she needed contrast (injected into the body, the contrast enhances and improves the quality of the MRI images). We were very concerned and didn't leave until speaking with the radiologist first to understand his suspicions. That was the day my heart broke and our lives were turned upside down. He stated that she had a malignant tumor in her spine. My body went cold and I didn't hear a word he said. All I could think about was holding my daughter. Everything after that happened so fast.

The next day we saw a neurosurgeon who confirmed that it was probably a mxyopapillary ependymoma based on the tumor’s location. That night, she had a total brain and spine MRI, which thankfully, confirmed no other tumors. On July 31, 2017, she was scheduled for surgery.  After six hours, we met with the doctor who was able to perform a total resection. He also assured us that these tumors are usually benign and radiation wouldn't be necessary. Two weeks later, the pathology reports came back and showed some mitosis and Ki-67 of 14%. Again, the doctor felt confident that the tumor was gone and suggested just keeping an eye on it.

Seeking a Second, Third and Fourth Opinion

Apprehensive about the results, we sought a second pathology reading. Wishing for a mistake in the first report, the second came back worse! Now classified as mxyopapillary ependymoma with anaplastic features. Unheard of!  So we did what anyone would do - we sought out a third and fourth opinion. All the results came back anaplastic. The tumor went from benign to malignant. We're now told by all the physicians involved that with this very rare type of tumor (three in the world we know of) Sofia must do radiation. After researching, we decided that proton radiation would be best for her well-being. The only center offering proton radiation near our area is two hours away. We are now waiting for the call to schedule her to get started. At which point, we will transfer to that town to be closer.

As parents we are still in the why us, why her, how could this happen stage. Sofia is my hero!  She has been so brave, strong and understanding of all that she is going through. She feels amazing compared to how she felt before surgery so I think that's all that matters. Being a nine-year breast cancer survivor myself, I know that we will get through this. Sofia is a warrior and she too will look back on this as just a terrible nightmare! 

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